In 2016, at the age of 45, I was diagnosed with HIV/AIDS. For the past seven years, I have devoted much of my life to educating the masses through my social media about what HIV is today. My social media presence, as well as my personal journey with HIV, has given me valuable insight into facts about the lives of HIV+ women that I wish more people knew.
1. We can have HIV negative babies.
yes This is the absolute truth! HIV+ women pose no threat to their unborn babies when on treatment. In the United States, we have routinely tested pregnant women for HIV since 1995. If a woman tests positive during her pregnancy or goes into pregnancy knowing her HIV+ status, a drug is available to protect babies from any risk of transmission.
2. We can breastfeed.
Breastfeeding guidelines in the United States were recently updated to read: “The risk of HIV transmission during breastfeeding is less than 1% (but not zero) for PWH on antiretroviral therapy (ART) with a sustained undetectable viral load by during pregnancy and after birth.”
The choice to breastfeed should be supported by all health professionals. Until these guidelines were enacted this year, a mother’s choice to breastfeed in the United States, even at a risk of less than one percent, put HIV+ mothers at risk of losing their children to the state. Reporting of HIV+ mothers who have chosen to breastfeed safely is now considered inappropriate.
3. There are not many of us.
In the US, the number of HIV+ women represents a small fraction of those annually diagnosed with HIV. Approximately 70% of new cases are M2M (men having sex with men).
In 2019, there were 34,800 new cases of HIV in the US, approximately 19% of which were women who acquired HIV from men (not women). There are no cases of F2F HIV transmission. We’re talking about 6,500 women a year in the US, given that there are 300 million people living in the US. Finding local support with other women is almost impossible. Women report to me that “the room is always full of gay men” and they feel invisible. This is one of the reasons I chose to talk publicly about my diagnosis because I couldn’t connect with anyone I saw on YouTube and there were no local support groups for women. It’s an incredibly lonely diagnosis in general, but even more so for women.
4. It is not always clear from whom we receive it.
Women in the US get HIV mostly from men who have sex with men or men who share drug needles. What I see repeatedly in advocacy is women reporting that they discovered their infections came from men having secret sex lives with other men. This is called DL or “low level”. It’s a culturally accepted term that even appears on Grinder as an option. Because this practice is clandestine in nature, it puts women associated with DL men at a higher risk of contracting HIV without their knowledge.
5. Higher risk of abuse.
HIV+ women are at significantly higher risk of physical, emotional and psychological abuse. We are told that we are damaged goods, that we are sick, that we deserve it, that no one else will love us, and that we must die. Because we are already vulnerable to abuse in our society, we now face more injustice in our interpersonal lives with this diagnosis.
6. Misdiagnosis is widespread.
Because our numbers in the US are much lower for new infections overall, we are often misdiagnosed down the road, which can lead to late diagnosis or AIDS. That was my experience. I didn’t “fit the mold”, HIV never crossed their mind or mine for that matter. In their defense, my symptoms weren’t worrisome as they came here and there, nothing that pointed to HIV exactly. It wasn’t until I got seriously ill that more tests were done and my diagnosis was discovered. I had HIV for three years before it became an AIDS diagnosis, meaning I had a CD4 count of 84 (>200 = AIDS) and had an AIDS-defining illness (PCP pneumonia). Since I was able to find the source of my infection (after diagnosis), all the pieces and timelines came together as a result.
In 2023, the world still hasn’t been educated about what it’s like to live with HIV today. We can live long and healthy lives and have zero risk of passing the virus to our sexual partners because of our treatment. It’s the stigma that still adversely affects our love lives, our friendships, our relationships with relatives, our employment, and our ability to access health care without judgment.